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FARAFARA Cure FA

Linda Johnson

LindaJohnson1Name: Linda Johnson

Age: 53

Where do you call home? Cazenovia, NY (Central New York)

Education (degree(s): BS Industrial Engineering

What is your relationship status? Do you have children? I am a wife and mom of two kids, ages 21 and 18.

What's a typical day for you? (i.e. daily routine, employment, student, stay at home parent, etc…) A typical weekday for me includes exercising, showering, feeding the animals (dog, cat, rabbit, fish), mowing the lawn (unless it’s covered in snow!), cooking, laundry, sending a care package to the kids, organizing/cleaning (I think I’m a little OCD!) … typical stay at home stuff! There is no typical weekend for me … traveling, dinner with friends, company over, etc. … it’s all good! Whether it’s a weekday or weekend, there is always time for a 25-minute nap followed by a cup of coffee! :)

How long have you known you are living with FA? (When and how were you diagnosed?) At age 38 I started noticing a very slight balance problem; by age 40 I had an FA diagnosis.

Are there any others with FA in your family? No one else in my family has been diagnosed with FA.

Describe your transition from walking to walker/wheelchair. I’d say I’m in the process of transitioning to a wheelchair now … I use a walker around the house, and I usually use a wheelchair when I’m out and about.

LindaJohnson2What do you like to do to stay active and what type of exercises work for you to stay strong? I exercise along with an exercise DVD for sitting people in my house … I turn the instructor’s voice and music off, and I play my own music on a good speaker on random – so the music is different every day, and I love it! I use my walker around the house as a way of exercising my legs.

What is a good trick to make daily life easier? To make life easier for me, I have mobility devices wherever I need them … for example, I have one walker for upstairs; I use my stair-chair to get downstairs; I have another walker for downstairs. To get to my van or golf cart in the garage, I use a very strong hand rail to go down two stairs into the garage to a third walker. Then I can drive around our 5-acre yard in the golf cart and visit the chickens or transfer (using strong arms!) to our tractor and mow the yard! In my mini-van is another walker, my wheelchair, and a dog bed! I also have a recumbent trike, but the hills in the area are a bit of a deterrent!

What is one way living with FA has POSITIVELY affected your life? FA has positively affected my life in that I have met so many wonderful people that don’t take life for granted!

What is a favorite motivational quote of yours? A favorite quote of mine is, “The best things in life aren’t things at all.”

Tell us a little more about you…Since I have late-onset FA, I fall into a different category … I already had an education, a great job, and a family when I was diagnosed. In fact, when I was diagnosed, we made a conscious decision to travel more and do more while it was relatively easy. Now I have “retired” (gone on disability), and I appreciate the slower pace.

Find a new Meet the Community interview every Monday. We are stronger TOGETHER!

AndreaKiessmtcsignatureAndreaKiess2015


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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